Hemochromatosis and Autoimmune Conditions

[Voyageur]

It really is amazing to see how her energy/mood has improved and her inflammation has quieted down with just getting rid of some blood.

Very

 

[Voyageur]

Today my physician left a message for me and called her back; she said she had good news; however i'm a little confused.

So the initial Ferritin test came out high at 341 ug/L (range less then 300 being their comfort level). Here is what came back today on the second test related to what this blood panel tested for:

"Iron & Iron Binding Capacity Panel"

Iron: 22 umol/l - References Range (9 - 32)
TIBC: 53 umol/l - References Range (33 - 78)
Iron Saturation Index: 0.42 - References Range (0.15 - 0.45)

Hemoglobin was still at 6.1 percent, Sodium 143 mnol/l (137-145), and Potassium dropped to 5 mnol/l (3.5 - 5)

Based on this, she said no worries. When questioned about the Ferritin reading being high, this came back as inflammation markers or other type influences like cold, infection etc. So although the panel on Iron looks ok, i'm left thinking something is not correct in the Ferritin assessment that was given, unless i'm missing something?

Also, remember that taking repeated blood draws to measure iron status can have a "normalizing" effect, so that "full iron panel" might not tell the full story.

The first test, if remembered correctly, had a draw of 5 vials. The second test with those latter results was a week later and contained another five vials (don’t know how many cc’s that equates to, so is that what is happening, it is not registering the correct markers?

That iron is really messing up with your metabolism. Yeah, decanting iron is a priority.

Based on the latter test, decanting a pint locally is not going to happen and will now have to travel a great distance to do so. Any advice on what you see here would be appreciated.

 

[nicklebleu]

Today my physician left a message for me and called her back; she said she had good news; however i'm a little confused.

So the initial Ferritin test came out high at 341 ug/L (range less then 300 being their comfort level). Here is what came back today on the second test related to what this blood panel tested for:

"Iron & Iron Binding Capacity Panel"

Iron: 22 umol/l - References Range (9 - 32)
TIBC: 53 umol/l - References Range (33 - 78)
Iron Saturation Index: 0.42 - References Range (0.15 - 0.45)

Hemoglobin was still at 6.1 percent, Sodium 143 mnol/l (137-145), and Potassium dropped to 5 mnol/l (3.5 - 5)

Based on this, she said no worries. When questioned about the Ferritin reading being high, this came back as inflammation markers or other type influences like cold, infection etc. So although the panel on Iron looks ok, i'm left thinking something is not correct in the Ferritin assessment that was given, unless i'm missing something?

Also, remember that taking repeated blood draws to measure iron status can have a "normalizing" effect, so that "full iron panel" might not tell the full story.

The first test, if remembered correctly, had a draw of 5 vials. The second test with those latter results was a week later and contained another five vials (don’t know how many cc’s that equates to, so is that what is happening, it is not registering the correct markers?

That iron is really messing up with your metabolism. Yeah, decanting iron is a priority.

Based on the latter test, decanting a pint locally is not going to happen and will now have to travel a great distance to do so. Any advice on what you see here would be appreciated.

Iron saturation is still a bit on the high side - of course the ferritin could just be inflammatory.

What I would do is to decant a few pints and then retest - if the ferritin goes down parallel to the decanting it is probably at least a mixed picture.
As long as you don't drop your haemoglobin your are on the safe side - most of us don't have an issue with iron deficiency and if the Hb should start to drop, just stop decanting and your iron stores will replenish by themselves (unless you are losing blood somewhere).

And I would also probably start on some oral EDTA, which is potentially anti-inflammatory.

And at the same time address other potentially inflammatory issues.

Anyway, that's my take on your results ...

 

[Gaby]

So although the panel on Iron looks ok, i'm left thinking something is not correct in the Ferritin assessment that was given, unless i'm missing something?

It seems the only safe thing to assume here is that your health care provider will not be able to read the measurements accurately. :/

From the Iron Disorders Institute book, you have iron overload.

Your transferring saturation is of 42%. Normal range is 25-35 percent. The book says:

If the patient has an elevated transferrin iron saturation percentage greater than 45% with an accompanying elevated serum ferritin, iron overload is present and phlebotomy can commence.

I assume you fasted for these tests? Your transferrin saturation is of 42% and ferritin 341. Plus, your blood work doesn't look typically like the one of a person following a low carb diet. I think you should still see if you can donate blood and/or start chelating iron. Are there mobile units you can go for blood donation? That case you don't have to travel very far away?

I was reading an article written by Mercola about cholesterol and the Statin Nation documentary. He mentioned briefly the issue of ferritin, which in his experience shouldn't be more than 80!

I'm donating blood tomorrow, decided I should get over the 16 gauge needle size phobia.

ADDED: Just saw nicklebleu's post. Well, sounds like a plan to me ;)

 

[Stoneboss]

Since the last doctor I saw refused to give me a blood test for more than just the ferritin level, I decided to see a Naturopath. By going with a Natuopath I was able to get a more in depth test for iron, but had to pay for it. Anyway, the results were: iron 55.8, TIBC 329.6, and saturation at 17%. For some reason he didn't include the ferritin level, so I went to see another doctor yesterday to get another blood test for ferritin. It took a bit of convincing for him to give me a requisition for another test for ferritin because he felt that my last test at 286.4 was perfectly okay, and I should just leave it alone. However, I got the requisition and will get the results in a couple of days. (He told me that if the ferritin level came back below the 300 marker that he wouldn't bother calling me, but I insisted that I wanted to know the exact number no matter what it was!)

Also, for the iron test with the Naturopath, the blood was taken at the time of the visit, so there was no fasting prior to the drawing of blood. Would this affect the accuracy of the results?

 

[Gaby]

Also, for the iron test with the Naturopath, the blood was taken at the time of the visit, so there was no fasting prior to the drawing of blood. Would this affect the accuracy of the results?

I think in your case is okay. I read in the book that if the initial test to determine transferrin iron saturation percentage has not been performed fasting and the finding is greater than 55%, the test should be repeated fasting. They advice against vitamin C and A supplementation a week prior to the blood test, and they suggest that people should be sufficiently hydrated prior to blood work. That is water, no tea or other drinks.

As a side note, lets keep in mind that high cholesterol levels in the presence of iron overload is really a very BAD combination. Excess iron will oxidize it. It is the iron that has to go either through decanting or chelation.

 

[mcb]

Since the last doctor I saw refused to give me a blood test for more than just the ferritin level, I decided to see a Naturopath. By going with a Natuopath I was able to get a more in depth test for iron, but had to pay for it. Anyway, the results were: iron 55.8, TIBC 329.6, and saturation at 17%. For some reason he didn't include the ferritin level, so I went to see another doctor yesterday to get another blood test for ferritin. It took a bit of convincing for him to give me a requisition for another test for ferritin because he felt that my last test at 286.4 was perfectly okay, and I should just leave it alone. However, I got the requisition and will get the results in a couple of days. (He told me that if the ferritin level came back below the 300 marker that he wouldn't bother calling me, but I insisted that I wanted to know the exact number no matter what it was!)

Also, for the iron test with the Naturopath, the blood was taken at the time of the visit, so there was no fasting prior to the drawing of blood. Would this affect the accuracy of the results?

There is a reason IOD says to do all the tests from the same blood draw (and while fasting). I have to leave right now and I don't remember the reason, but I think you should be cautious about drawing conclusions from numbers taken from different blood draws.

 

[Stoneboss]

Also, for the iron test with the Naturopath, the blood was taken at the time of the visit, so there was no fasting prior to the drawing of blood. Would this affect the accuracy of the results?

I think in your case is okay. I read in the book that if the initial test to determine transferrin iron saturation percentage has not been performed fasting and the finding is greater than 55%, the test should be repeated fasting. They advice against vitamin C and A supplementation a week prior to the blood test, and they suggest that people should be sufficiently hydrated prior to blood work. That is water, no tea or other drinks.

As a side note, lets keep in mind that high cholesterol levels in the presence of iron overload is really a very BAD combination. Excess iron will oxidize it. It is the iron that has to go either through decanting or chelation.

Thank you Psyche. As far as my cholesterol levels I had: Cholesterol: 6.11 mmol/L, HDL: 1.76 mmol/L, LDL: 3.86 mmol/L. So it seems my "bad" cholesterol is on the high side...

 

[Stoneboss]

Since the last doctor I saw refused to give me a blood test for more than just the ferritin level, I decided to see a Naturopath. By going with a Natuopath I was able to get a more in depth test for iron, but had to pay for it. Anyway, the results were: iron 55.8, TIBC 329.6, and saturation at 17%. For some reason he didn't include the ferritin level, so I went to see another doctor yesterday to get another blood test for ferritin. It took a bit of convincing for him to give me a requisition for another test for ferritin because he felt that my last test at 286.4 was perfectly okay, and I should just leave it alone. However, I got the requisition and will get the results in a couple of days. (He told me that if the ferritin level came back below the 300 marker that he wouldn't bother calling me, but I insisted that I wanted to know the exact number no matter what it was!)

Also, for the iron test with the Naturopath, the blood was taken at the time of the visit, so there was no fasting prior to the drawing of blood. Would this affect the accuracy of the results?

There is a reason IOD says to do all the tests from the same blood draw (and while fasting). I have to leave right now and I don't remember the reason, but I think you should be cautious about drawing conclusions from numbers taken from different blood draws.

I think what I will do is to just leave the blood tests thing alone for a couple of months. I'll just concentrate on donating blood every 56 days, and continue with "3 on, 4 off" cycles of EDTA. Besides, there's not much more I can do except to decant blood on my own, and even then I probably wouldn't be able to monitor my ferritin levels because it's so difficult in getting requisitions for blood tests...

 

[Carl]

I haven't had any tests done, but about a month ago I decided to go and give blood (500ml) anyway. I felt fatigued for a day or two afterwards, but then felt better than usual.

I had my mercury fillings out on Friday, and started the detox protocol on Sunday, which consists of ALA, NAC, EDTA, and DMSA. Been eating nothing but very small fatty meals, drinking tonnes of water + a lot of weak tea, and getting a lot of sun exposure.

Sunday and yesterday were awful, I was brain fogged, deaf in one ear, joint pains, clumsy, dizzy, and had a strange headache (was using some caffeine to mask these symptoms, to get through the day). Today, however, I feel great, better than I've felt in a long time, and I'm about to take my last dose for this cycle and head to the sauna. Everything exiting my body has smelled kind of metallic, and I have the strangest breath (never smelled anything like it).

I don't know if it's the iron, heavy metals, or combination, but this stuff is working.

SO basically I have no good data to offer, but I agree with the others that a chelation therapy is probably in order for everybody, HHC or not.

 

[Gawan]

It really is amazing to see how her energy/mood has improved and her inflammation has quieted down with just getting rid of some blood.

Very

I agree :D!

My mood did also improve a lot in the last days and I'm feeling like my old self again. I did in the last two weeks two rounds of EDTA and the multi mineral stuff. The first round I needed to stop after the second day, cause my heart was running a bit fast and felt crampy. Still from time to time are unpleaseant body feelings or tiredness, but with the improved mood I can cope with it much better. So it was a bit too much in the last 6 months, coping with diabetes, the no-motivation mood, other strange body feelings (tiredness, brain fog), plus the work I needed to do. Sometimes I was not sure anymore if it was just imagination or real. Only problem now, I have to cope with too much energy and need to direct it where it belongs ;D.

I did order EDTA calcium disodium from the suggested page nicklebleu wrote about _purebulk.com today.

They did send me today the money back without further notice, so I'm ordering the lesser evil edta capsules with maltodextrin to give it a try.

That's weird ... especially given their slightly aggressive advertisement style.
I was never a fan of Purebulk in the first place anyway.

[...]

I need to correct myself, they did contact me, but it was in the spam folder. They did cancel it, that I don't have to pay more money for the product cause of customs.

 

[Laura]

It is kind of amazing how getting some metals out can really improve the way you feel physically and mentally. I'm going to do another round soon, but after doing 4, it seems that the improved feeling persists, especially the feeling that my legs finally are getting some energy. They've felt like lead, literally, for so many years that going up and down stairs now is a pleasure. Never thought I would say that.

 

[Regulattor]

After this article I'm convinced that Dr. Mercola (probably his stuff) is fallowing this forum regularly. Check this out.

_http://articles.mercola.com/sites/articles/archive/2013/06/05/elevated-iron-levels.aspx?e_cid=20130605_DNL_art_1&utm_source=dnl&utm_medium=email&utm_content=art1&utm_campaign=20130605

 

[adam7117]

I've just gone through the first round of EDTA - interesting, I feel different already. There is a definite improvement in mental clarity and sleep. I can also speak better - yes, this sounds odd but it's true. I tend to mumble a lot but these past two days I could express myself better and more clearly. Almost like a fog is lifting from my speech and thought centres. Let's see how that progresses.

From day one, I could taste a slightly metallic flavour in the mouth. By today (day three), this became more intense and there is acetone-like smell to it, too. Almost as if I was in ketosis... weird, though ALA every morning on an empty stomach would have pushed my body in that direction.

There is a pretty bad outbreak of colds going around at the moment - at least in the office. This makes a little weary since my normal protocol would be to up zinc and Vit C intake. Yesterday, I contemplated taking my usual precautionary 5g of C. However, a thought occurred to me that there could be an adverse interaction from that. Google found the following article abstract:

EDTA chelation therapy, without added vitamin C, decreases oxidative DNA damage and lipid peroxidation
http://www.ncbi.nlm.nih.gov/pubmed/19364193

Abstract

Chelation therapy is thought to not only remove contaminating metals but also to decrease free radical production. However, in standard ethylene diamine tetracetic acid (EDTA) chelation therapy, high doses of vitamin C with potential pro-oxidant effects are often added to the chelation solution.

The authors demonstrated previously that the intravenous administration of the standard chelation cocktail, containing high amounts of vitamin C, resulted in an acute transitory pro-oxidant burst that should be avoided in the treatment of pathologies at risk of increased oxidative stress such as diabetes and cardiovascular disease.

The current study was designed to determine the acute and chronic biochemical effects of chelation therapy on accepted clinical, antioxidant variables. An EDTA chelation cocktail not containing ascorbic acid was administered to six adult patients for five weeks (10 sessions of chelation therapy); antioxidant indicators were monitored.

Immediately after the initial chelation session, in contrast with the data previously reported with the standard cocktail containing high doses of vitamin C, none of the oxidative stress markers were adversely modified. After five weeks, plasma peroxide levels, monitored by malondialdehyde, decreased by 20 percent, and DNA damage, monitored by formamidopyrimidine-DNA glycosylase (Fpg) sensitive sites, decreased by 22 percent. Remaining antioxidant-related variables did not change.

In summary, this study demonstrates that multiple sessions of EDTA chelation therapy in combination with vitamins and minerals, but without added ascorbic acid, decreases oxidative stress. These results should be beneficial in the treatment of diseases associated with increased oxidative stress such as diabetes and cardiovascular diseases.

In other words, probably not a good idea... I'll up those in the next 4 days, as well as magnesium and Vit B. I'm also wondering how my liver is going to be affected by the detox process. Do you think that Milk Thistle would be beneficial during the break period?

Interesting stuff.

 

[Carl]

I've just gone through the first round of EDTA - interesting, I feel different already. There is a definite improvement in mental clarity and sleep. I can also speak better - yes, this sounds odd but it's true. I tend to mumble a lot but these past two days I could express myself better and more clearly. Almost like a fog is lifting from my speech and thought centres. Let's see how that progresses.

From day one, I could taste a slightly metallic flavour in the mouth. By today (day three), this became more intense and there is acetone-like smell to it, too. Almost as if I was in ketosis... weird, though ALA every morning on an empty stomach would have pushed my body in that direction.

I know what you mean about speaking better. Not only is my nasal voice starting to slightly clear up, it feels like I can generally speak more clearly, eloquently, and at the right pace, with the right inflections. I've never been great at this, but there are some definite improvements. I was speaking to Arabic people yesterday so it really helped to be clear and concise with speech.